YumaBev has Parkinson's Disease and a sense of humor! Funny stories and helpful tips about her life with Young Onset Parkinson's Disease. Come laugh with her as she fights Parkinson's Disease with humor.

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Wednesday, December 30, 2015

Gimme, Gimme, Gimme

As I sit at my computer desk, (yes, I still happily use a desktop PC, complete with a wired mouse and keyboard) trying to come up with an end of 2015 blog story, an email pops up from a Parkinson's Disease non-profit asking for a last minute, end of the year "tax deductible" donation to keep them afloat. Every few hours, for the last few weeks, they pop up. Some from newly created Parkinson's groups I've never even heard of.

As much as I'd like to be able to donate, the reality is "tax-deductible" means nothing to me. My income is so low, I'm not required to file tax returns, but must anyway to renew my Arizona Property Tax Exemption for Disabled Individuals. Some state legislator said, "Let's make people who are disabled, some cognitively impaired, complete both Federal and State Tax forms, with the bottom lines often being negative numbers, just to prove they don't have huge incomes, so they can save a few hundred dollars on their property taxes each year." Who says the government has no sense of humor? Sorry, my mind tends to wander. This explains why I head to the kitchen to eat breakfast and end up picking long blonde hairs up off the area rug instead. Okay, where was I? Oh, yeah, working on a story. Ding! There's another email. Maybe I should write about all these non-profits. It seems to me there are way too many of them, all competing for a limited amount of funds. Before you start shouting at me, I don't have anything against groups advocating for Parkinson's. But do we really NEED several dozen of them? All paying salaries for management and staff. Many duplicating the same things the others do. To be honest, I don't know why many of them were created. Ding! Another email. I'm pretty sure I know WHY Michael J. Fox started his own foundation. He wants a CURE and is willing to use his clout to help fund research. I also know why the lobbying group PAN was formed. To push the Parkinson's "agenda" to Congress and occasionally succeed. Though no matter how many letters and emails I sent to MY so-called representatives, I always got the same "Party-line" response back from them. Congress is only interested in getting re-elected and keeping their big-money donors happy. So unless they are personally impacted by Parkinson's, they don't really care about those of us living with it. Ding! Another email.

Every year, I get invited to attend the PAN forum in Washington D.C. The registration fee is $300 and that doesn't include travel costs and hotels! That's almost half my monthly income. I also get invited to PAN's Morris K Udall dinner, which is even more expensive.

Speaking of food, I'm hungry. Did I eat breakfast? Oh, look, there's a dust bunny hiding under my desk. Ding! Another email. Oops, sorry. I got distracted again. Back to my story. I've attended several Parkinson's conferences over the years, sponsored by various non-profits. The one I enjoyed the most was the Davis Phinney Victory Summit, they focus on LIVING with Parkinson's.

Davis Phinney

I helped set up a half-day conference here in Yuma (with Medtronic as a sponsor) and got my favorite Doctors to come speak. But, after you've been to a couple of Parkinson's conferences, they get boring. The only part of them I enjoy is meeting others with PD whom I've only met online. But due to the format of these conferences, you don't have ANY time to socialize. Ding! Another email.I have a little bit of extra money saved, so who should I give it to? I've already "Paid it Forward" at the Davis Phinney Victory Summit I attended in Las Vegas. I sponsored someone during the Unity Walk as well. I sent a donation to Wikipedia because I use it for info often. I've sent free copies of my Parkinson's Humor book to people who I thought might need a laugh or two. I've given local Parkies rides to the Doctor or to our support group meetings. Ding! Another email. Who has helped the Yuma area people with Parkinson's the most this year? Who has helped me the most? Maybe I should use this as a deciding factor. In this case, the answer is easy. It's the instructor who teaches the SilverSneakers® exercise classes. I think I'll give her an end of the year tip! It won't be tax deductible, but that doesn't matter.

7 comments:

Gimme gimme a hug! Love ya and all you do for us Parkies. If you were stinkin rich they'd pay you to speak at the conferences, pay your transportation and put you up in a great hotel with all the amenities. That's what you deserve.. squirrelHappy New Year to you and wonderful husband!!Barbara

Glad you brought this up.It would take a lot of time to develop a spread sheet on which Parkensons organizations are really doing something that is missed by all the others.Wish I had the time. Besides MJF, one that stands out for me is Parkensons Alliance. Ding.

Yuma bev, keep your sense of humor. Write more parody songs, The levity that your blog adds to my life is clearly measurable. Having little disposable income can be a big asset in fund raising for the cause. I don't fault various charities for asking again , annually, They know where the money is. Mike J fox,(notice first name basis) lol. is a very public place to start. I got involved in funnd raising thru the NY Parkinson's Unity Walk. 100% of funds raised goes to support the 7 major pd charities. They have an angel who covers the office expenses. I keep trying to raise more each year. I feel that I give people with the means the opportunity to donate to my favorite cause instead of other good causes. My team Young Onset of Westchester and the Bronx raised over $31,000.00 usd last years campaign. This year we hope to do more. Every year I write a personal appeal share my story and motivate others to not only write a check but to fund raise as well . How motivating it is to get people to write a personal appeal and just to send it to every email contact they ever had. This year I am celebrating my DBS success. I had instant results as it was turned on and better than I could have imagined. Warmest regards Alex your New York fan

Bev - Love reading all your blogs. My husband is a Parkie and apart from a bit of shakiness he suffers badly from tiredness and sweating. Oh and lousy sleeps. Love to read your stuff as you make me smile. Thanks

Parkinson's Humor, the book, is now available online.

One of the Top Parkinson's Blogs of 2015, 2016 and 2017

Sherryl's YouTube Channel

Sherryl Klingelhofer, from Tillamook Oregon is a Master Fitness Trainer. Her Father had Parkinson's, so she developed certain exercises to help him. Now she makes videos of Parkinson's Specific exercises to help others with Parkinson's. Here is the link to her YouTube channel.

All about YumaBev

My name is Bev Ribaudo and I was diagnosed with Parkinson's Disease at age 47, but my symptoms started in my mid-30's. Humor comes naturally to me and a little disease like Parkinson's can't take it away. I have been married since 1985 to the most Wonderful Husband in the whole world. I like Photography and Karaoke.

IF you think you might have Parkinson's, check out these sites.

Yuma AZ Parkinson's Disease Support Group

The Parkinson's Disease Support Group meets the first Monday of each month (except June, July, Aug and Sept) at 9 am at Daybreakers Cafe 10800 N Frontage Rd, Yuma AZ 85367 (I-8, exit #12 Fortuna Blvd, go north, on left, behind the truck stop). Everyone welcome, including care-partners and families of people with Parkinson's. For more info, contact Beverly at 928-246-2876 or via email at YumaBev@gmail.com